Infant Botulism Awareness

My name is Michelle Roy, and I am reaching out to share a deeply personal and urgent story—one that has completely altered our family’s life and one I hope will help raise awareness of a rare but devastating disease: Infant Botulism.

My son Alexander was born on November 6, 2024, a healthy, strong, and vocal baby boy at Providence St. Joseph’s Hospital in Burbank, CA. Like many newborns, he had a bit of trouble latching, so we alternated between breastfeeding and bottle-feeding, under our pediatrician’s guidance. He was cleared by doctors and we went home the following evening, joyful and thankful.

On December 10th, at his 1-month checkup in Burbank, Alexander appeared to be thriving. However, that same day, while walking to our car in Glendale, we passed by a yard where a gardener was using a leaf blower near exposed soil. Despite seeing us approach with our children, he didn’t pause, and the dust cloud enveloped us. It didn’t occur to me then that this moment would change everything.

Roughly one week later, subtle but terrifying changes began: Alexander’s once-loud cry became weak and raspy. He struggled to eat, taking over an hour to finish just 2 ounces. Then he stopped latching, began sleeping more, and lost the strength to hold up his head. His body became limp, his arms flopping to the sides during tummy time. Something felt deeply wrong.

I trusted my instincts and reached out to our pediatrician, Dr. Team, who immediately instructed us to take him to UCLA Santa Monica. By December 26th, Alexander was admitted. The doctors suspected neuromuscular diseases like SMA or muscular dystrophy, but I kept advocating for an Infant Botulism test, something my pediatrician had mentioned.

After 10 days of invasive testing (MRI, spinal tap, brain scan, and more), all results came back clear. Desperate, doctors finally agreed to finally submit a stool sample after my pediatrician and I kept insisting from the beginning, to test for botulism—a grueling process due to strict lab requirements. On January 6th, we got two calls that changed everything: the first to say Alexander tested negative for SMA, and the second to confirm he tested POSITIVE for Infant Botulism Type A, most commonly found in soil.

I collapsed in tears. Relief. Fear. Gratitude. Overwhelming emotions all at once.

From there, we worked closely with the Infant Botulism Prevention Program (IBPP) in Sacramento, particularly with an expert named Joeie. Alexander began the long road to recovery: feeding support, occupational therapy, and physical therapy through Lanterman Regional Center. He received BIG-IV (Botulism Immune Globulin), which helps infants recover faster and avoid mechanical ventilation.

But while we fought for our son’s life, my insurance denied coverage for his entire hospital stay, citing his condition wasn’t “medically necessary” for inpatient care—even though botulism can be fatal without hospitalization and could kill an infant in just 40 days or less. Our total bill was $158,000. After insurance, we’re left with $29,000 unpaid, despite meeting our $3,000 deductible and paying over $5,000 out-of-pocket already.

This journey also triggered postpartum depression, severe anxiety, and the eventual threat of termination from my job while I was still on a pregnancy medical leave. I’ve had to advocate not just for my son—but for myself, navigating a broken healthcare and employment system while still healing from childbirth and trauma. 12 weeks of protected leave for a woman to give birth to a child, plus recover and bond with her newborn is definitely not enough time. We are a country where immigrants come to make their dreams come true and live a better life, we help other countries when they are in need yet we can not afford to give mothers more time with their children is a disgrace, especially when medical science has proved that the most important part of a child’s development is between 0-3 years old; so why are mothers in America not allowed to have that time to help their children grow and develop? New Zealand, Ice Land and others allow at least 1-3 years of medical leave and at no charge. So, I wish to bring awareness to this and to help change our rules/laws on maternity leave for all mothers who have to go through something so scary with their newborn baby and still be expected to return to work at 12 weeks.

We are now 6 months out, and Alexander is crawling, lifting his head, and progressing beautifully. He was cleared from the feeding tube in March, started holding his head up on his own in May, his body up own his own with no support in June and at the end of June early July he had started crawling. So, we remain hopeful that Alexander will make a full recovery now that he has released all the toxin and bacteria from his gut.

I’m now turning to my community and the public for help.

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📢 Please help raise awareness about Infant Botulism. Let’s help spread awareness about this disease, so another family doesn’t have to suffer or be left with an outstanding medical bill that they are unable to afford from unnecessary test. This disease is rare but real—and preventable if people understand the risks. We are the third confirmed case in Glendale, California and other families need to know the signs and causes, especially when simple things like a leaf blower stirring up contaminated soil can pose serious danger.

🙏 Thank you for taking the time to read our story. We would be incredibly grateful if you could help amplify our message through your network, platform, or publication.

P.S Dr. Team and Joeie are not their real names for professional reasons.